I tell you, I take a night off from blogging, not even glancing at the blog or my e-mail, instead falling into a deep slumber at 10 PM after The Dog Whisperer on TV, thanks to a somewhat stressful week and a large meal plus a beer, and what happens?
Abraham’ Cherrix’s uncle comments on the old blog and the legal decision regarding whether Abraham has to undergo chemotherapy is issued, three days later than originally anticipated, that’s what! In this case, the judge decided that Abraham must report on Tuesday to undergo conventional therapy. Fortunately, I realize (most of the time, anyway) that the blogosphere won’t fall apart if my commentary on an issue is delayed a day. However, since I’ve been blogging so much about this case, I’d be remiss if I didn’t comment on these two developments. Contrary to what some are saying, I’m not “partying” over the ruling in the Cherrix case, although I do consider it to be probably the correct ruling.
First, a bit on the decision itself:
NORFOLK, Va. — A judge ruled Friday that a 16-year-old boy fighting to use alternative treatment for his cancer must report to a hospital by Tuesday and accept treatment that doctors deem necessary, the family’s attorney said.
The judge also found Starchild Abraham Cherrix’s parents were neglectful for allowing him to pursue alternative treatment of a sugar-free, organic diet and herbal supplements supervised by a clinic in Mexico, lawyer John Stepanovich said.
Jay and Rose Cherrix of Chincoteague on Virginia’s Eastern Shore must continue to share custody of their son with the Accomack County Department of Social Services, as the judge had previously ordered, Stepanovich said.
The parents were devastated by the new order and planned to appeal, the lawyer said.
I’m deeply ambivalent about this decision, but have reluctantly come to the conclusion that it is probably the right one. Here’s why I’m ambivalent. I detest quackery like the Hoxsey treatment. I strongly believe that Abraham and his parents made this decision to pursue the Hoxsey treatment based on lies about its efficacy. As I have pointed out before, the clinic where Abraham wishes to go claims an 80% success rate in treating cancer, a figure for which there is no clinical or scientific evidence whatsoever. If I were in Abraham’s situation and was told that I could either take nasty chemotherapy with stem cell transplant with what, by my best estimation from the news reports and a review of the lymphoma literature, probably has a probability of cure somewhere around 50-60% or that a nontoxic herbal regimen would give me an 80% chance of surviving, of course I’d pick the nontoxic herbal regimen. The problem is, the promise of an 80% chance of survival is a lie, plain and simple. It is not based on science; it is not based on clinical trials; it is not evidence-based. I detest quacks like those pushing the Hoxsey treatment who will rob this young man of a decent chance of a long and happy life. I hate seeing a young teen seduced by the siren call of such quackery and heading down a path that will end his life prematurely. Given that, I’m relieved that the judge gave him a shot at that long life, even if it was against his will and that of his parents.
On the other hand, my ambivalence derives from my inherent distrust of giving the government too much power over medical decisions and the not unreasonable question of whether a 15-16 year old is mature enough to decide for himself, even if his decision will surely result in his death at a young age. If Abraham were a 60 year old instead of a 16 year old, I would concede that he has every right to decide to use quackery instead of evidence-based medicine, while at the same time decrying the unsupported claims that led him to that decision. But Abraham is not 60 years old; he is 16 (and was 15 when he chose the Hoxsey therapy). I’ll concede that this is a gray area. I’ll also concede that we as a society exercise some hypocrisy in this area. For example, in some cases, society will consider a 16-year-old an adult for purposes of punishment when that 16-year-old has committed a particularly heinous crime and try such teens as an adult, with the full possibility of adult punishment. In some circumstances, 16-year-old girls can choose to undergo an invasive medical procedure (an abortion) without parental consent. In both of those cases, we consider a 16-year-old to be “mature” enough to be treated as an adult for purposes of the law. The difference in Abraham’s case is that he clearly does not understand what he is doing, his protestations that he’s “done his research” notwithstanding. It might be different if he understood that he is going to die if he doesn’t get the conventional therapy that he needs and is opting for quality of life over quantity of life (although death by untreated Hodgkin’s disease is not very pleasant). However, from interviews I’ve read or heard, it is clear to me that Abraham believes that the Hoxsey therapy has a good chance of curing him. Worse, rather than trying to persuade him to act to save his life, his parents are feeding this delusion.
When the parents of a minor (in this case, Jay and Rose Cherrix) pursue a course of treatment that is so obviously quackery, the state does have an obligation to step in. In the case of someone like Katie Wernecke, a 14-year-old who was diagnosed with Hodgkin’s lymphoma when she was 13 and whose parents wanted to pursue high dose Vitamin C therapy rather than conventional therapy, I have to come down on the side of the state’s right to prevent her parents from harming her through an acceptance of clear-cut quackery, as few would argue that a 13-year-old is old enough to make such momentous medical decisions. Her case, as far as I’m concerned, is no different than the case of a Jehovah’s Witness who refuses to let his child be transfused after an auto wreck or Christian scientists who refuse chemotherapy for their child with cancer in favor of prayer. In all such cases, the state needs to step in. The only reason Abraham’s case causes me pause is because he is older, on the cusp of becoming an adult.
All of this leads me to a comment left on the blog by someone calling himself Forrest, who represents himself as Abraham’s uncle. Based on the tone of what he wrote, I believe that he probably is indeed who he says he is. Forrest writes:
I am a scientist and this boy’s uncle. Among the other things I have read here are fair amounts of unsubstantiated character attacks on Abraham, Jay and Rose.
Those of you doing that should feel ashamed and probably need to spend some time in self-reflection.
I’d be the first to agree that eccentric is probably a good label for them, but they are not evil, and far from stupid. I am also of the camp that subscribes to treatments with proven efficacy. But I am also a widower who buried a wife who did conventional and alternative therapy for stage 4 colon cancer.
Abraham is 16 and he will die. I’d prefer it if he were 80 when it happened, but it may happen this year or next. If he asked my advice, I’d recommend chemo.
However, I was not asked and for the record, neither were any of you pompous bastards.
You may not like it, but the same government that can’t even fix the potholes in Virginia’s highways has no business making medical decisions for anyone. It may be Darwinian, but it’s none of your damn business, so debate all you want, bue please let me join in when your wife or hubby or child is sick and command you do my bidding. Better yet, let’s get some nameless hack of a bureaucrat to decide if it’s going to be chemo or radiation for your cute little baby.
First, let me express condolences regarding Forrest’s wife. Unfortunately, her situation is not analogous. Stage IV colon cancer is not curable. The only exception is in cases where there are metastases only in the liver that can be successfully resected surgically, in which case there is between a 20% to 30% chance of long-term survival. Sadly, only a small minority of patients fit into this category. All I can say is that alternative therapy would not have saved her life either.
Second, Forrest clearly recognizes that Abraham will die if he continues on the present course, which shows that he recognizes the Hoxsey treatment for the quackery that it is. Nonetheless, I have to point out that it is irrelevant whether Abraham has asked for my or anyone else’s advice. His case raises important issues regarding the balancing of the rights of parents to raise their children as they see fit versus where the obligation fo the state is to step in when the parents are clearly choosing outrageously badly. Consequently, it is fair game for comment by anyone. I have to ask: Does Forrest object to those raging about the “tyranny of the state” or making specious references to the Nuremberg Code in this case, making impassioned defenses of Abraham’s and his parents’ decision, and urging Abraham to fight on, a sampling of which includes bloggers and pundits such as Below the Beltway, Bronwyn Lance Chester, SpunkyHomeSchool, or Mike Adams, among many others? Apparently, that’s OK, but it’s not OK for me or commenters on this post such as anjou, a prolific commenter who is also a lymphoma survivor, to comment or appear unsolicited advice if that advice happens to be: Don’t fall for the false promise of the Hoxsey therapy. Yes, I will admit that some commenters in some posts flirted with going over the line with comments about Darwin or natural selection, but Forrest should also be informed that I exercise very little control over what commenters say as a matter of blog philosophy. Interventions are rare and generally only in the cases of serious trolling, comments that might represent libel, or commenters who are so disruptive that I’m reluctantly forced to ban them. I strongly believe in freedom of speech, and my blog is run accordingly.
We must remember that it is entirely possible for parents to make bad, even incredibly bad, health care decisions completely out of love and that such decisions don’t necessarily mean that the parents are bad parents otherwise. For example, I’m sure the Jehovah’s Witnesses who deny blood transfusion to their children or the Christian Scientists who think that prayer is the way to deal with serious diseases love their children just as much as any other parent. Similarly, none of us is claiming that Jay and Rose Cherrix don’t love Abraham and want the best for him. However, that love does not mean that the state has the obligation to support their bad decision. The only gray area is not whether the state has the right to intervene to protect children from medical decisions on the part of their parents that are so bad as to constitute neglect. Parents’ rights to raise their children as they see fit do not extend to clear medical neglect. The only question that matters in this particular case is whether Abraham is mature enough to be considered an adult in the eyes of the law. I would hope that we could have a reasonable debate about whether he is in fact mature enough and the other Constitutional questions raised by this case, free from the hysterical “Social Services is coming for your children” rhetoric from Abraham’s lawyer and rants against the medical establishment from credulous bloggers who mistakenly believe that quackery like the Hoxsey treatment can actually cure cancer.
In reality, the judge was placed in a no-win situation. If he ruled for Abraham, he would be acquiescing to the death of a minor due to medical neglect and quackery. Now that he has ruled against him, he will be subject to unrelenting attacks from people and groups who argue either for the absolute right of people to choose non-evidence-based medicine and for parents to raise their children any way they see fit, even when, as in this case, they choose quackery that will clearly result in their child’s death. (Indeed, it wouldn’t surprise me in the least if he, like Judge Jones in the Kitzmiller v. Dover case, were to receive death threats.) Similarly, in Abraham’s case, as in many other cases, conventional medicine is in a no-win situation. If Abraham dies despite receiving conventional therapy for his lymphoma, alties and altie activists like Hulda Clark‘s pit bull Tim Bolen will blame conventional medicine for “poisoning” and “burning” him to death against his will. If conventional chemotherapy and stem cell transplant succeed in saving Abraham, alties won’t attribute his survival to that conventional therapy, but rather to the Hoxsey therapy that he has taken thus far and no doubt will continue to take if he ultimately submits to conventional therapy.
Nonetheless, I and (I daresay) most doctors favoring the practice of evidence-based medicine are willing to deal with such abuse and lack of credit , though, if it means that Abraham and children and teens like him survive their cancers.
Previous posts on this topic:
Two young victims of alternative medicine
Update on Abraham Cherrix
A “defense” of Abraham Cherrix and his parents?
Magical thinking versus lymphoma
Choosing quackery over evidence-based medicine: When is a patient old enough?
Technorati tags: Hoxsey, cancer, alternative medicine, quackery, Starchild Abraham Cherrix, Abraham Cherrix, Parents’ Rights